One West Virginia community is making strides to find a cure for Friedreich's ataxia. Friedreich ataxia, or FA, is a rare degenerative neuromuscular disorder that affects one in 50,000 people in the United States.
Anna Gordon the summer before her freshman year of high school begun to notice that her balance was always off. The family searched for answers. After a year of testing, one geneticist changed the family forever when she wrote FA on a piece of paper and handed it to Missy Gordon, Anna’s mom.
“I took her to physical therapy after this appointment and I was sitting in the car when I looked up what FA actually was and I just thought our whole world came crashing down,” Missy said.
Missy immediately began researching what exactly her daughter was about to endure.
“It causes a lot of things starting with the motor skills and coordination, falling, and then it leads to things like diabetes, blindness, deafness, scoliosis -- which Anna already had -- and eventually to cardiomyopathy and premature death,” Missy said.
Even though Anna physically and vocally sounds different than her peers, she wants everyone to understand that the disease does not affect your brain or the ability to be independent.
“I wish people would recognize even though we are in a wheelchair and have slurred speech, we like to have intelligent conversations with people,” Anna said. “Like people will talk to me all slow and like I’m a child and it’s very irritating, especially because if I am somewhere by myself and people will ask me where my mom is. I’m like I’m twenty years old, I can handle myself.”
Anna is a third-year elementary education student at West Virginia University at Parkersburg. While attending college, she lives in the basement of her childhood home. Her parents converted the area to resemble an apartment that can accommodate Anna’s needs, including a stair lift that helps her reach the first floor.
“I want to teach kindergarten or first grade and then hopefully go back to school and get my masters in autism and move to an autism specialization,” she said.
Missy says her daughter’s diseases has also affected her sister, Ali, and brother, Chase.
“When one person in the family is diagnosed with FA, the whole family is affected. I know Chase,” she said. “He is constantly carrying her drinks and helping her and Ali, I mean, it’s been more emotional on her than anything because it’s like a survivor's quilt almost and it just, it takes a toll on everyone.”
Supporting Research for a Cure
Although FA does not currently have a cure or treatment options, Anna and her community are raising money and awareness for the Friedreich Ataxia Research Alliance known as FARA.
“Anna’s Army is a group of kids and it started in our living room with her older sister, Ali,” Missy said. “Ali was a senior in High School when Anna was diagnosed and she had had some friends over one night and they decided she was going to do a basketball game to help create awareness for FA just like you do a basketball to create awareness for breast cancer or some other type of diseases. So, they asked Anna what her favorite color was and they said purple so they started ordering up t-shirts and designs wanted to make it something positive and cheerful because it was a fun atmosphere.”
Despite Anna graduating from Parkersburg South in 2015, the school has continued to support the group through fundraisers.
“I thought once I graduated it would fizzle and die out, but it has done the complete opposite, At South they have a saying that tradition never graduates and they’ve held true to that.
Anna’s Army holds fundraisers spanning several states, and has raised more than 200,000 dollars for FARA.
“There is a physician or a doctor over in France and she was able to cure FA through mouse models and it will be done through gene therapy and they expect that to come in seven years. Right now, there are 10 different drugs and trials and Anna is going to be participating in one of those trials,” she said. “If they could just do something to slow the process until the cure gets here because Anna has done it had it for five years and there is still no treatment or cure and it’s really frustrating to see your child just slowly progress and you know they cure is possible if you can just make it more well-known and get the funding for it.”
Finding a cure isn’t the only thing that Anna hopes stems from Anna’s Army, though. She wants to use the platform to help other people in her community who are struggling.
“Anna’s Army has awakened people to see how many people out there need help, because a lot of times when people need help they won’t vocalize it, which is fine, but I am not the type of person to sit back and just let it happen like I will make it well known,” she said.
The Anna’s Army mission statement is “Today Matters.” Missy Gordon wants anyone who is living with FA, or a rare disease, to not feel as if their lives are over.
“Don’t let FA define you, you define yourself and just take advantage and life every day to the fullest.”
To find out more about Friedreich ataxia, visit CUREFA.org.